Should I go on medication?

[jul2873]

First of all, a huge thank you to all of the people who post on this site. I have been seeing a neurologist who specializes in RLS but I have learned much more from here.

Here's my issue. I'm a woman in her late 60's who has had rls for years, but it has lately--within the last couple of years--gotten worse. Previously is was just an occasional annoyance; now it is a nightly occurrence. The doctor has done lots of tests (blood work, MRI, neurology tests, etc.) and concluded it is primary--nothing he can find explains it. So he is suggesting I start using the neupro patch. He assures me that side effects are minimal or non-existent, and that the medication doesn't cause the rls to get worse.

I'm suspicious, and very afraid of the medication. Currently I'm managing pretty well. I save walk-around jobs for the evening (unloading dishwasher, etc.) and find that if I sit at my desk instead of on a couch, I am comfortable. I usually wake twice in the night with rls. Both times I can almost always go back to sleep within a half an hour either by standing at my cutting table and reading the news on my computer, or by taking a warm bath. Since reading the postings on here, I have added a heating pad and support stockings and they also help. So, yes, it would be nice to sleep through the night, but realistically, at my age, I probably wouldn't, even without the rls.

I told the doctor that I didn't want to take the medicine (he had no other suggestions for ways of managing this) but would call him back if it got a lot worse. He didn't seem very happy with me, and assured me that he had many patients on the medication, and that he could switch things around if I got side effects or if it got worse.

So . . . am I needlessly worrying? I would really appreciate your feedback, and thank you in advance for reading this rather long posting.

[Polar Bear]

Welcome to our Discussion Board.
Sorry that your symptoms of this horrid disease have gotten worse though at present you appear to be able to cope with your distraction methods. I wonder, how do you manage at the movies, the theatre, situations where you have to be sedentary for a length of time and cannot use the action of movement for relief.

With regard to your bloodwork, did you have your ferritin serum level checked as this is very important. It is not always done in routine bloodwork. A doc may say your iron is ok. But it is the iron ferritin serum level that is important to us sufferers. So you may have to request this. Check if it has been done and ask for the actual reading. Dr may say that it is normal, but 20 is normal to most folks. Us sufferers should aim for a level of nearer 100. This level helps to reduce the risk of augmentation if taking a Dopamine Agonist drug.

If you are able to cope without medication that is terrific. For most of us there comes a time when medication is our only relief. The start off is usually the DAs i.e. Requip, Mirapex and of course the Neupro patch which should deliver the drug on a steady basis rather than the peaks and troughs of taking a pill. I have symptoms 24/7 and use medication continuously. Without it I would be non functional.

Are you needlessly worrying about taking medication ???? We are all so different, medications work differently for all of us. If you are coping without medications that is excellent. If the time comes when you find this method of coping is no longer working then 'usually' the only route is medication.

There is no cure. And there may come a time when you need to consider the benefits of taking a medication against how your symptoms are affecting your life. The honest truth... most medications have side affects, not everyone has every side affect. Some of us appear to have few side affects. My main one was insomnia and I take a sleeping pill to offset this (zopiclone). Also often a cocktail of lower dose medications work well and this helps to reduce side affects. Drugs can always be changed, tweaked, adjusted, and often this is done several times before a satisfactory result is achieved. Just remember that if you start on a DA that you should titrate upwards very slowly, and not always up as far as the Dr may suggest. Just go up enough to gain relief, and not take more than is required.

Never be concerned about making a long posting... we are here to try and help, we are not medically trained, we are all sufferers and try to share our experiences and what did or did not help us.

Please ask anything you feel you need an answer to. We may not have the answers but we will try to help and to find out what we can.

So, please check on your ferritin level for starters.
And none of us want to be pill takers, it depends on your symptoms and their affect on your well being.

Oh.... and we are also here when you are fed up and feel the need to have a rant and to stamp your feet.

Personally... I have no regrets of taking medication. I suffered for 30 years before taking medication. Meds are my lifeline.

[jul2873]

Thank you so much for such a helpful response. You do make me feel better about sooner or later having to go on meds.

My iron is 96, the transferrin is 252, the %saturation is 31, and the TIBC is 310. My ferritin is 94. The doctor said that was okay. It sounds like it would be beter if it was a little over 100, so I may start taking a little iron. But it doesn't look like it's low enough to cause much in the way of symptoms.

Thanks again for taking the time to respond. Take care. I see that you are dealing with a much more severe case of RLS than I am.

[ViewsAskew]

Just my perspective - I waited to take meds until my quality of life was severely compromised - and in retrospect I am glad I waited. I'm also glad I did it. Taking them can cause problems and there is no such thing as a drug that doesn't have side effects! Sure, some people don't get them, but some people do. You might not, but you might. I think it's best to be ready for that, to know what you're getting into, and to do it because you don't have any more alternatives.

Of course, that's just me and how I feel. Others likely feel differently about it.

[jul2873]

Thanks. That is pretty much what I've been thinking but it is very nice to hear someone who has been there agree with me. I think I'll wait a bit.

[badnights]

wow, polar bear, that was the best answer ever!

jul2973, I agree with both the others. I would think, the state you're in, if you think you can hold out, maybe it's best to do so. But I will also caution you that you might not notice when your quality of life has deteriorated enough to justify meds, because it will creep up on you. If things were suddenly that bad right now, you would easily realize it was time for meds, but it will creep up on you, and you will gradually adjust your expectations of life lower and lower. Just watch out for that, always try to imagine how "normal" felt, so you can know how bad it's gotten.

With a ferritin level of 94, you're probably safe to take the Neupro patch. That doesn't mean you won't augment, but you're less likely to, and perhaps would be fine on the patch for years before you augmented, if you even did.

Me in your shoes? I would definitely wait. But watch out for what I said, about that creeping distortion in your view of what "normal" is; there is a time for meds, and they save lives, and give meaning back to life.

[jul2873]

A really good point, about quality of life decreasing. I will definitely keep it in mind. Thanks so much.

[badnights]

Keep posting and let us know how you're doing